We hear all kinds of stories on Patient Opinion – and increasingly, we are hearing stories of care for people with dementia, often in hospital settings.

Sometimes, these experiences are good. For example, one relative wrote of a memory clinic experience: “We were with Neill for an hour and he connected with dad so well the hour flew by.”

Often though, things can be very challenging. One patient said: “For the first 3 days I was in the Acute Admissions Unit where the staff were having to deal with a trying situation where 3 of the 6 patients had severe dementia.” They go on to say: “I never saw them dealt with in any other way than gentleness, compassion and respect.”

But some ward staffing levels don’t seem to be sufficient for the needs of people with dementia, leading to concerns about safety – as this relative reported: “I was told he was high risk and he had wandered off the ward on numerous occasions, but they managed to get him back in.”

Time to think differently

Stories like this demonstrate clearly how difficult it can be for everyone involved – patient, family and staff – when someone with dementia needs to stay in hospital. It isn’t right to go on like this. It is time to think differently about how hospital care is provided for people with dementia.

That’s why the team at Patient Opinion has decided to support John’s Campaign. The campaign is named after Nicci Gerrard’s father, John, who had been diagnosed with Alzheimer’s in his mid-seventies. Aged 86, he was admitted to hospital with infected leg ulcers. He went into hospital strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house, in spite of his Alzheimer’s. But he came out skeletal, incontinent, immobile, incoherent. He required 24-hour care and barely knew those around him.

His family feel certain that if he had not lain for five weeks in hospital without people he knew to tend and comfort him, he would not have deteriorated so drastically.

John’s Campaign calls for the families and carers of people with dementia to have the same rights as the parents of sick children: to be allowed to remain with them in hospital for as many hours of the day and night as is humanly possible.

How we think we can help

We think Patient Opinion can help John’s Campaign by providing a safe feedback channel for families who want to share their experience of hospital care for a relative with dementia. People are often worried about giving honest feedback in case it affects their care, and that is especially true when the feedback is about someone else, who may be vulnerable. So being anonymous is important, at least to start with.

Patient Opinion can also help by making it easy to see where things are changing, and where they are not. There may be hospitals which already welcome help and support from carers of people with dementia, irrespective of visiting hours – so let’s hear those stories and share them. But there may be others where carers can play little or no role in the care of their relative. Let’s hear those stories too.

If we share these stories widely, inside and outside the health care system, we can make it easy for everyone to learn from good practice and encourage the much-needed changes John’s Campaign is about. We can see where progress is being made, and where things are lagging behind.

How you can help

For John’s Campaign to lead to widespread change, we need your help. Do you have a story to share? Do you know someone who does? Post it on Patient Opinion. We’ll make sure it gets shared with people who can help to make change happen, including staff in providers, commissioners, regulators and patient organisations.

1) - How did the hospital admission reduce him to the state described? - A) Most probably through a disease centred as opposed to a patient centred approach ( so a change is needed here).

2) How was he allowed to deteriorate to the state that required admission to hospital? - who , if anyone was in charge? and why did they not take action sooner?

A) - more difficult but we should address how to avoid such patients being admitted as this often leaves patients unable to cope once their treatment has been completed, hospitals can only do so much and rehab is better done in the community

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